posted
It has been a very, very long time since I have visited Lymenet - and an even longer time since I've posted. Given the bickering and squabbling between "activists", I've felt this site is detrimental to the cause in many, many ways.
On that same token, when my daughter's illness was first diagnosed and my wife and I were trying to figure out how to go forward, this site was extremely resourceful. For that reason, I feel like it is my duty to come back... to give an update for those new to this horrendous disease.
Kaya's is a story of hope!!!
A quick summation of the way things were, way back when I was a regular on here...
My daughter was 5 years old, in the spring of 2007 when she started neurologically declining at a very rapid pace. Within a six month time frame, she went from being perfectly healthy (and fully potty trained - day and night) to losing ALL of her abilities. It started with extreme tiredness, a decline in her attentiveness and a lost desire to play. She soon started showing neurological signs - loss of fine motor skills, shuffled gait, slurred speech, etc... She eventually regressed to wearing a Pull-up at all times. She lost all emotions (or at least it appeared that way) - no longer able to smile, laugh or cry. She became wheelchair bound and bedridden and was unable to remain in a seated position because she was too weak to remain upright. If placed on a chair or couch, she couldn't muster the strength to scoot to the edge, let alone stand. She could no longer walk or talk. Her dexterity and/or strength were so poor she could not hold a cup to drink and she lacked the ability to drink from a straw or even a child's Sippy cup (presumably due to weakness). There were many times that my wife or I had to feed her because she was too weak to hold a utensil. We thought our little girl was going to die.
Doctors were clueless to the root of her problems and "prepared" us for a fatal diagnosis. My wife's exhaustive research led to her ultimate diagnosis. Understandably, we were skeptical at first - unsure if it "was really Lyme". We didn't want to experiment on our baby girl when it came to treatment, but wanted to follow every path in trying to get her better. All doctors on her case agreed that as ill as she was, aggressive antibiotic therapy "was worth a shot" even though none of them were sure which side of the treatment approaches was valid (Lyme IS rare in our area - so far).
When treatment began, Kaya didn't respond with improvements. But she did quit declining. After the rapid deterioration the previous six months had brought her, a plateau in symptoms was enough to keep us and her doctors going with her treatment.
I would say it was nearly a year before we really started to see improvement. But over the 2008 holiday season, Kaya turned a corner...
For nearly the past three years, Kaya has continually improved. She is fully mobile. Her speech, though still needing strengthened and clarified, has returned. She still wears a Pull-up at night. But she regularly uses the bathroom on her own throughout the day. She runs and plays, climbs ladders and goes down slides. All of those things that children do that we took for granted - she has that all back!!! At the beginning of the summer this year we switched Kaya to oral antibiotics - sort of like a trial run through the summer, so that she could swim. We meet with the doctor on Friday of this week to find out his take on whether she needs to go back to the IV meds or continue with them orally. I don't know what the medical advice will be. But from a father's viewpoint, I think she'll likely continue with the oral meds. There's a chance they'll even arrange to remove her port access.
So to any and all of you new to this nightmare, wondering if there is any hope... wondering if there is any truth to "the quacks" (as some would refer the Lyme literate)... put your trust in God, have undying faith trust your heart and your instincts and never give up. THERE IS ALWAYS HOPE!!!
posted
Kaya's Dad, Thank you for sharing your story! It's exactly what many need to hear. My daughter is 16 has lost many of her abilities and it's hard to remain hopeful when she's not getting any better. She's only been in treatment for six months, so it's early days yet.
Thank you for sharing and reminding us that there is hope! Best wishes to you and your family, and continued improvement for Kaya.
Posts: 333 | From Lyme Here Too | Registered: Mar 2010
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posted
Kaya's dad, thank you for the update. So glad to hear about your daughter's progress. May she continue on the path of wellness. Many of us parents have walked in your shoes, and have lived or are living this nightmare.
I am a little puzzled by your statement about "bickering and squabbling between 'activists'" and that you've felt this site is "detrimental to the cause in many, many ways."
If it weren't for the "activists" here and elsewhere your daughter's illness might very well have been dismissed as being "psychological"/"psychosomatic"/"in her head"/"having a conversion disorder"/"I don't know what it is but it isn't Lyme/'Lymes'"
I'm left wondering how you came to the conclusion that this site is "detrimental to the cause in many, many ways." And I must say I'm a bit taken aback by that statement, especially since you came here seeking help and support and apparently received it.
Regardless, I am happy to hear about your daughter's progress. It's always good to hear happy news.
-------------------- You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'
---Eleanor Roosevelt Posts: 748 | From somewhere | Registered: May 2010
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
What a heart-rending story! And one that should not have to be (not being diagnosed for so long while she declined, that is).
Thank God that she is improving so much. I hope for continued good progress for Kaya. Thanks for telling your/her story. It needs to be told, especially to people who don't know about Lyme.
BTW, there are a lot of Lyme patients in WV, it's just that the doctors don't know about it!
Posts: 3770 | From around | Registered: Mar 2008
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
What a heart-rending story! And one that should not have to be (not being diagnosed for so long while she declined, that is).
Thank God that she is improving so much. I hope for continued good progress for Kaya. Thanks for telling your/her story. It needs to be told, especially to people who don't know about Lyme.
Posts: 3770 | From around | Registered: Mar 2008
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
This is why we do what we do. It isn't easy and it isn't fun... but we stick with it for one reason...
The children.
God bless you and your family. Glad you were one of the lucky ones to get the help you needed.
posted
Thank you for sharing your wonderful story. I am so glad your daughter is doing well. My daughter and I are both making improvements. Your story gives all of us hope and encouragement to continue to fight.
Thanks again and best wishes for continued improvement.
Posts: 747 | From Utah | Registered: Apr 2010
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posted
I saw you and your daughter at a conference some time ago, don't remember now how long it has been. But she was not in good shape then. So, it is a very joyful change that you are reporting. So glad to hear it.
Activism is about the only reason we have any doctors to treat us, and the situation is still far from good. We lost several this year to the persecution. Yes, it would be nice if we could all agree and cooperate.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
So happy that you have your little girl back .
I can't imagine the helplessness, that as parents you must feel, when your child is so sick, and you're searching for answers.
Thank goodness there are doctors willing to take on the controversy and risk their licenses to treat us .
Posts: 964 | From san diego | Registered: Oct 2009
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posted
Thank you so much for coming back here to tell us how Kaya is doing!! Sounds like she is doing GREAT!! I know your family is SO glad you and your wife stepped out in faith to find what works!!
Praise the Lord for that!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
Kayasdad, what a wonderful story of hope! Thank you so much for sharing it with us! I am so happy to hear your little girl is getting better!
I agree with lou, who said, "Yes, it would be nice if we could all agree and cooperate."
I think that where you find humans, especially in a strongly emotional situation, you'll have "bickering and squabbling." It is the human condition.
Doesn't mean we should give up though, by any means. Then we've lost the good fight for sure.
(Not refering here to your situation, Kayasdad, as I don't know it, but to the human condition and most especially to lyme activism. )
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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posted
To Kayasdad: May I ask how did your daughter get lyme? does your wife has it?
Posts: 158 | From pittsburgh | Registered: Aug 2009
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SO happy to hear that your daughter is recovering--
These success stories are what keep those of us still in the trenches fueled to continue with the fight........
Wishing you continued success and please update us again in the future!
Posts: 648 | From northeast | Registered: Feb 2009
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Thanks for coming back and telling us about your precious daughter and her journey out of this nightmare. Good job as parents in sorting through all the BS and getting help for her.
As far as bickering, yes, there used to be a LOT of bickerig about the time that you would ahve beem here. You may be talking about something else that I'm not aware of but the bickering was more around the difference in treatment philosophy (natural vs allopathic) for the most part. Not so much about political activism.
Many people left the site because the bickering made it nearly impossible to get useful information. Things have settled down now and there isn't much bickering.
May your daughter keep improving and go on to enjoy a happy and healthy life!!!!
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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Jane2904
Frequent Contributor (1K+ posts)
Member # 15917
posted
Thanks for coming back and sharing your wonderful story.
I am so glad to read the Kayla is in recovery. It gives me hope in our daughter's Lyme journey.
Posts: 1357 | From Massachusetts | Registered: Jun 2008
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